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Old 08-17-2009, 07:48 PM   #1
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I have SFN-Do You?

Hello to All,

I have SFN and have been dealing with it for several years now. I have bad days, like today, and then I have not so bad days. The not so bad days seem to come in the warm to hot months.
Today was a bad day due to my left leg, hurt from just above the knee to the top of the ankle. Thought I would have to get my cane out if it stayed the same. Nearly fell several times.
I take several medications, a cocktail, not just one and they seem to hold me some what. I have tried to stop some of the medications only to find that they were doing more than I thought.
Let's have a conversation.

Will

 
Old 08-18-2009, 03:56 AM   #2
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Re: I have SFN-Do You?

Will, I have SFN also, I had to chuckle when I read your post, I had the same exact day yesterday and have pretty much been up all nite with burning legs. I did break out my cane yesterday or I would have fallen. I was dropping my whole left leg from the knee down all day. I do the same thing, I get thinking I just can't take all these meds and then I try to do without a couple of them and get reminded of why I take them. Especially my tegratol, if I don't take it its like being electricuted and stung by a swarm of bees. Keeps my face from being struck my lightening pains also. I started knowing something was wrong about 4 years ago, its been downhill since then, I am hoping that it will stop getting worse, seems like I lose alittle groung every few months. Hope alot of folks jump in here, there are alot of SFN folks on the boards.
Barbara

 
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Old 08-18-2009, 08:35 PM   #3
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Re: I have SFN-Do You?

Hello Barbara,

Thank you for your reply. Sorry you have this disease and hope it doesn't get worse for you.
My doctor has told me mine will get progressively worse. I will continue to fight back against it. It may hurt me, but it will not control me.

Keep fighting SFN and don't give up!

Will

 
Old 08-18-2009, 10:39 PM   #4
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Re: I have SFN-Do You?

Will,
I haven't been told if mine will continue to worsen or not. they really don't know why I have it in the first place, closest they can come is, well your pre-diabetic (which I take meds for) but I can't quite believe that pre-diabetic would do this, for goodness sakes I'm not diabetic yet and 2 years ago when they told me that, I got right with the program to to keep my BG under control and according to the tests have done very well. I think of myself as still in the diagnosis stage since I really don't have any answers just alot of "well, its not that " I hear alot of folks say that they tested neg for stuff a along time before they tested positive. So, who knows. Sometimes I don't care. Then things will get worse and I'll not get back what I lost, then there I am again wondering why, when will this at least stop getting worse. The worst part is looking at my husband and saying I'm sorry all the time, he's great but, I know he grieves as much as I do for what we don't get to do anymore. I was a real ball o' fire back in the day! Really I could be a total pain in the ***, now I see that, not everything is bad about finding yourself vulnerable, makes you think about who you have been and who you should be. I hope I'm a better person.

 
Old 08-20-2009, 05:47 PM   #5
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Re: I have SFN-Do You?

Barbara,

I Have had totally different days since last writing. Isn't SFN fun?
No problem in getting around and only shoulders have been talking.
This is what makes people think that we are insane or stupid. Thankfully my wife understands and I have a doctor that treats SFN. Otherwise I would be considered insane.
Keep up the fight against SFN!

Will

 
Old 08-21-2009, 11:36 AM   #6
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Re: I have SFN-Do You?

Will,
I hear you completely! Glad you can move, enjoy. I got some sleep last nite and am feeling alot better myself today, no cane! I thank goodness for my husband all the time because he understands too. He sees it, it didn't make sense to him for a long time but finally he saw, it has no rhyme or rhythm, it just is, and its awful. And good in the morning doesn't mean good at midday, and bone tired doesn't mean you get any sleep. And rest is a very relative term. Do you get a feeling like a sensory overload? Light, sound,just everything? I find that I often have to get very quiet sometimes for awhile and be very still in a cool dark room, not try to sleep just quiet my mind and body for a while or or the pain, numbness,zaps just keep winding up further. Even 20 min. can help. Makes me a great hostess!
Barbara

 
Old 08-21-2009, 03:48 PM   #7
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Re: I have SFN-Do You?

Hello Will and Barbara
I have had SFN for over 3 years now, along with Rheumatoid arthitis, restless leg syndrome, insulin resistance and fibro. It is interesting that you bring up the sensory overload. I have been feeling like that, and just couldn't put into words the way noise and light seems so intense and to really make me feel irritated and overloaded. I am in chronic pain so I was wondering if I am also becoming depressed. I also seem to be on the verge of tears a lot of the time and I am trying to hide this, as my family are used to seeing my sunny disposition. I couldn't face having to explain about the sensory overload feeling. If they only knew how much I want to just be in a quiet room without all of the jarring lights and loud noises.
The only medication I am on right now is codeine 30 mg x2, three times per day. I might as well be taking smarties for the pain relief. I was wondering if perhaps it is the codeine that makes me feel this way.
Anyway, I wish you both the best in the daily struggle against the most frustrating of problems. Today is not so good for me, but I always hope tomorrow will be better.
Take care, Daisy

 
Old 08-21-2009, 05:06 PM   #8
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Re: I have SFN-Do You?

Hi will ,Barbara and Daisy,
I have neuropathy in both feet ,legs and left hand. I am a stge 3 colon cancer survivor,I have secondary fsgs (kidney filter damage) ,severe poly-arthritis and although not diabetic I am severely insulin resistent. The RA is treated with methotrexate,the fsgs with four bp meds and I was on lyrica but I could not affords it so I have stopped taking it. The general consensus is that my neuropathy is the same as diabetic neuropathy and I am being treated with metformin to try to lower my insulin production. I have noticed a worsening of my symptoms since stopping lyrica but at least I can pay the rent. I still work and I find that stress and pressure make me worse as does the noisy flat I live in . For me fishing is my life preserver. I have a small boat and when I am out on my own fishing the rest of the world and my pain just seems to vannish. I am not interested in living forever ,I just want the time I have to be quality. You sometimes wish that life would pick on someone else for a change ,then you come on these boards and realise that it does. My best wishes for some relief to all of you,Ron.

 
Old 08-23-2009, 02:37 PM   #9
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Re: I have SFN-Do You?

Welcome Daisey and Ron, So glad you responded, That really is the meat of the nut isn't it, we're not alone in this, it just feels that way sometimes. Can be overwhelming, I used to fish when my kids were young, maybe I should try it again, I'm good at sitting around these days and reading can be frustrating due to brain fog and eye problems. I have a state park not far from my home, used to love going there. If I didn't have my little dogs I think I would be alot worse off than I am. None of them weigh more than 10lbs, but they are tons of love, they just seem to know when I can play and when I just need them to lay there and be quiet. I love them so, they are what keep me moving, I can walk threw fire to take them out and feed and water them. Sounds silly but I really do credit them with keeping my mental health in check as I have to be responsable for their sake. Not to mention my DH but I think you know what I'm saying. Thanks again for checking in here, hope to hear more from you.
Barbara
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Old 08-23-2009, 03:56 PM   #10
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Re: I have SFN-Do You?

Hello to all,

I tried to write earlier today but the site wouldn't let me post. I don't know the reason for that.
Any way, I'm glad to hear from all and hope it will continue.
Have you noticed that we don't say "get well soon" when we talk with each other? That's because we know that unless something happens in the world of medicine, we will always have SFN. Happy thought isn't it. Enough said.

I had a fall at work on Friday. My left leg gave out on me and I took a hard fall. My left leg also took the damage. Skin gone in two places and the foot and ankle swollen. Keeping one site bandaged and the other doing better. Walking better this evening. I must admit this one scared me. I went down hard, as there was no warning. SFN strikes again!
Well, everybody take care and keep up the fight.

Will

 
Old 08-23-2009, 07:52 PM   #11
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Re: I have SFN-Do You?

Hello SFN'rs! What a group we are!!
First of all Will, I am so sorry to hear of your fall! That is a reminder to me to take my cane on the days I feel a little off. I hope that you haven't done serious damage to your ankle and foot. That is part of the problem with SFN- the weakness is so unpredictable. Just what you need when your feet already hurt so badly! PLease let us know how you get on.
Your questions is interesting and makes me think ( something I'm not too good at these days!) You are so right- we know that the battle is and always will be on-going. Not one doctor has said to me that one day all of this will be over, because they don't know what is causing my SFN. Aussie, another SFN poster, has been fortunate enough to be able to lessen his pain because he found out that his is related to low B12 levels and was able to correct them. ( I apologize Aussie if I got any of this incorrectly) But it is extremely difficult when they say it is idiopathic.

Barbara, I too have four 4 legged best friends that are the lights of my life. My Chihuahua-yorkie is only 3 1/2 pounds but I credit her for getting me thru each day. When my days are bad she is happy just to "be" with me no matter what we do and some days it isn't very much! And of course, I have an understanding husband that makes my life more enjoyable and helps out with chores and everyday things.

I believe I will take Ron's example and find something I love to do to help me spiritually and physically. Many years ago, I used to teach deep water fitness and I feel the best ever when I am in water. There is an arthritis water workout group that I think I will join. I need the exercise and I think I will enjoy taking a class with others that have physical challenges.

Will, please take good care of yourself! I wish you a speedy recovery from your fall.
My best wishes to all of my fellow SFN'rs, just taking it one day at a time!
Cheers,
Daisy

 
Old 08-23-2009, 10:03 PM   #12
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Re: I have SFN-Do You?

Hi Will & Daisy - I don't have muscle weakness or coordination problems and had thought that strength and motor coordination were not affected when only the small fibers were involved with neuropathy. Now when I hear you two talk about these symptoms, I am wondering if your neuropathy also involves the long fibers. Or, does SFN by itself also cause weakness and lack of motor coordination? Sorry about your fall Will, but I am glad you are sharing your SFN experiences again as hearing others' experiences is very helpful to me and many others. Ruby

 
Old 08-24-2009, 01:49 PM   #13
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Re: I have SFN-Do You?

Ruby, I don't know the medical definitions about which fibers do what or even exactly what has caused my problems, all I know is I fall, I stumble, I can't make it up steps sometimes, or I can't make it down them. I use a cane part time, a walker part time, and part time I can walk around my house on my own two feet. Who knows, I had a bad spill in july that landed me in the hosp., I was laying on the couch, the phone rang, I went to get up to answer it and just had no leg, I had dropped foot and really a dead knee too. I should have been more careful but I was half dozing. I wish I had some answers, mine is mostly left foot drop, but I can't count on that as my right one has done it to. I can be sitting and this will happen or if I try to stand very long then nothing works. Thank goodness I don't have this in my hands yet, just numbness and pain, sometimes I cannot write or type because of weakness and incoordintation but this is alot less frequent than my legs. I keep whining that I just can't figure how limbs that are so numb can burn and hurt so much. I mean really how can your feet be on fire and your leg muscles be aching like they are freezing? How can your bones ache? I thought bones didn't really have any feeling?
Ok whine over, I have actually had a pretty good day, it not hot, not cold, not humid, the house is quiet, and the sun is shining. Actually I feel really good right now, just sitting here. I'll take it. Hope everyone else finds alittle peace today.
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Old 08-24-2009, 02:04 PM   #14
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Re: I have SFN-Do You?

Will, goodness sakes, I hope your alright after your fall. I don't know what you do on your job but if you work around machinery you've got to be careful. I hope you don't have to climb around or anything. I know I'm a danger just around my house, lol.
I wanted to ask everybody, do any of you find that snug socks make you feel better for awhile? what about shoes, sometimes I want a shoe on only to need to take it off, I wear these soft shower slides mostly as I cannot bear to walk barefoot even alittle, anybody had any good suggestions?
Barbara
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Old 08-24-2009, 07:27 PM   #15
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Re: I have SFN-Do You?

Hello to everybody,

Well I'm still sucking air and my leg seems to be better. Wife says swelling is down and I'm walking better.
I also wear really light sandals at the house. Prefer them to barefoot as this can hurt alot of the time. Don't want snug anywhere around my feet. I will say that at night my feet will freeze even in the hot of summer. Have to sleep with a light blanket on the feet and shoulders.
I also don't know why the SFN bothers my coordination, especially in my legs.
I have asked my neurologyst about coordination problems and he said it should not be happening. Only thing is...it does! Maybe we should all find neuro's who have SFN, then maybe we could get some straight answers!
Ok, time to close, tired. Will write again soon. Keep up the fight against SFN!

Will

 
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